Monday, October 17, 2011

Transplants- the big bean shaped light up the end of our tunnel

I would be the last person to ever dismiss the extreme importance of the kidneys. An organ you probably never even think about actually does all these incredibly important things. If there were an organ of the week award, I'd be nominated the kidney A LOT. But, as crucial as the kidneys are, I will say there are worse organs to lose! Because it turns out God gave us all an extra kidney. The wonderful thing about kidneys is you can go about your life really well with only one. And while that doesn't particularly help Max and Addie who have none right now, it does help them in the long run because their daddy and I can survive with only one. And that means our big plan is that we'll each be donating one of our kidneys to one of the twins.

Now as soon as I say that, people start firing a million questions at me so I promise I will try and answer the most common ones. First of all, 'are you even a match?'- well, I'm not sure but probably. I am a blood type match to both babies but there will be more specific cross-matching done over the next couple of months. Cross-matching actually has to be done close to the transplant because recieving blood transfusions can change it. But odds are I am going to be a better match that a random stranger so we're just working with that assumption for now. We're less sure about Al because we don't actually know his blood type. Odds are that it's the same as mine and both kiddos (as a genetics major, I can picture Punnet Squares in my head pretty well so I know the odds are in our favor) but when we start our detailed donor testing in the next couple of months, we'll confirm that. So for all of you praying for us we would LOVE prayers that Al and I are both matches so that both babies can recieve a parent donor kidney. I am praying we are not faced with the difficult situation whereby we have one parent kidney and 2 babies (while a great plotline for a made for TV movie, it's not a chapter of this story I want to face). Now we will look into other living donors if Al and I are not matches as we know my mom is a blood type match and have other relatives offer to be tested but we would love to be able to give them that gift ourselves so we are praying we are matches... and would love for you to join us in praying for that.

Next question would probably be 'who gets whose kidney and when???' Our current thinking is that we would transplant Addie sooner as she is bigger than Max, more mobile than Max and has had a harder time with fluid and dialysis than Max. Assuming I am a match, I will go ahead and donate to Addie since I am smaller and so the baby who goes first should really get the smaller kidney. Then we'll allow a few months for me and Addie to heal and fully recover and then transplant Max with hopefully Al's kidney. When exactly all that will happen depends on a lot of things. Size wise we are not terribly far away- the surgeon at our hospital would consider transplanting at 10kgs (22lbs) and Addie is currently about 9.4 (20lbs). Now that's the smallest size possible, not necessarily the 'ideal' which would be more like 12-15kgs (25-30lbs). The next big hurdle is insurance and paperwork and just all the logistical side of things. Which is where we are at currently.

Max and Addison spent 7 months at our hospital in the city and as I've said in a previous post, I LOVE our hospital. And I adore their kidney doctor. She met them when they were less than a month old and has been so positive and optimistic and supportive every step of the way. I think she is incredibly intelligent and she's also warm and personable. So we love Dr Swinford. And she is the head of dialysis patients AND the head of post transplant patients. So if we get transplanted at our hospital, their doctor who saved them when they were small and sick would be the one to follow them ongoingly. The problem is that I have an HMO insurance plan and for some random reason our hospital is in network for NICU and dialysis but NOT for transplant. Which means Aetna wants us to move to Texas Children's and get transplanted there. I have no doubt that Texas Children's is a phenomenal hospital and if that is where we end up, we believe God will have a reason for us being there. BUT, we really want Dr Swinford to oversee the transplants and we want to stay at our hospital. The lingo we are using in fighting this is that 'continuity of care would be in the best interest of the patients'. Which really just means we are emotionally attached to our hospital and we really aren't up for another big change. So we're appealing the decision and it's a big deal. And I'm fighting for the doctor I really believe is in Max and Addison's best interest. We have the financial advisor for Memorial Hermann is fighting for us and our case manager at Aetna is fighting for us and hopefully we'll win. If not, we'll head down the street to the other hospital and believe God knew better than us and that's where we're meant to be.

So that's where we are at. Despite my knowing better than to ever try and plan anything, in my head my plan is that we will try and transplant Addison around March (my Spring Break) and Max over summer. Even though that is my plan, I think it's likely we'll end up being more like Addie over summer and Max a few months after that, just because of all the logistical hurdles we're dealing with. And because they are still little so there's really not a rush. Other that the fact that transplants will be really wonderful for us. It'll give us freedom and will help the babies develop and ensure them overall greater health. It isn't a cure because transplant will involve its own issues- the babies will have to be on anti-rejection meds and we'll have to be particularly careful the first year about public places and travelling as a result. But they won't be hooked up to a machine for 18 hours so it sounds pretty amazing to us.

Another question I get a lot is about how can an adult kidney go in a baby? Well, they used to try and use children cadever (or deceased) donors but they actually found there to be more problems with that. It seemed the rejection rates were higher and the life of the kidney was shorter. While your own kidney will grow with you, a donor kidney would not. So it is actually better to have a full sized kidney so that it can last them into adulthood. Now, their donated kidney will not last them forever. At some point, they will lose functioning of that kidney and need another transplant. But it should last them 10-20 years and maybe longer. So it will give them the chance to grow up and hopefully be young adults before facing that. Which is one of the reasons why we are so keen for a parent donor as it would likely give them longer- more like 15-20 years than 10-15. And even though obviously Al and I's kidneys are bigger than theirs, surgeons are very skilled and do manage to fit it in!

When we first started talking about this idea of donating a kidney it seemed really daunting. I remember Al being so saddened by the idea of me having to go through a surgery on top of everything else. But, for one thing we've watched our babies both have a kidney removed twice and so we can't imagine how we could not face something that they have already so bravely faced. The surgery is done laproscopically and the recover times are relatively short. I would be able to be back at work within 2-3 weeks. The recovery would be easier than a C section and I survived that! The worst part would be that Al or I wouldn't be able to lift things 20-30lbs for about 3 months. Which is hard when you have 20-30lb twins that you love lifting and carrying! So that is why we would make sure there was at least 3 months between their transplants so that one of us fully able to do that stuff while the other is healing. But honestly, even with it meaning surgery and time off work and recovering, I want nothing more than to give one of the babies my kidney. We spend a lot of time wishing we could do more for them and it would bring us great joy to give them the gift of a kidney.

So that's where we are at with transplants. I feel really excited that we are in the process of working on it. I know it's a huge deal- big surgeries and lots of nervousness about who will donate and worrying about rejection and so forth. But for us, it really is the light for us right now. Dialysis is hard and it's limiting and it helps us to know that it's temporary. The future is bright and we're positive about what lies ahead. We know that our lives will never be normal and as I've mentioned before, we are ok with not being normal. After all, no one is! We're all different and crazy in our own ways! But in a couple of years, Max and Addison will have a kidney and dialysis will not be part of our daily life. Max's airway will have hardened and he won't be turning blue. The babies will have hearing aids or implants that enable them to hear. It's going to be a lot of work to get there and it won't always be easy but we're doing everything we can NOW to ensure the best possible future for them.

And in the meantime, we are also enjoying every day now with them. I have been determined not to live longing for the future and completely miss the joys of the present. When the babies were in the hospital, I spent as much time holding them and loving them and enjoying them then as I could. Because those days were precious. They are growing up and my time with little bitty babies is over so I am glad I soaked up those moments. And they are just so incredibly fun and cute and social now and we are loving our time with them at home. Being on dialysis does not stop us from having a wonderful time with them. Yesterday morning Max and I cuddled up on the couch and he cooed to me and smiled at me and we spent an hour just hanging out with each other. And last night while we watched TV, I lied on the floor and played with Addison for hours while she rolled all over the place and blew raspberries and giggled and smiled. We take advantage of every moment of time with them and soak them up. Because yes, the future is bright and yes, we are excited about transplants but we are also loving today.

Some pictures of me loving my babies this weekend...

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